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In late July 2014, my life felt like it imploded after I was diagnosed with relapsing-remitting multiple sclerosis.
Since then, I’ve had to not only adjust the way I move through the world, but have found myself educating others about what this incurable autoimmune disease is actually like.
It would make life a whole lot easier if a few things about multiple sclerosis (MS) became common knowledge. To that end, here’s what I wish everyone understood about MS.
There are criteria that define MS, but MS manifests itself uniquely in each individual.
Some people with MS use a wheelchair or a mobility aid, like a cane. Some have vision issues, struggle to focus, or lose their ability to taste.
The symptoms experienced are the result of the damage the disease has wrought on the nerves in the brain and spinal cord. The location of the damage to the protective lining of those nerves — which interrupts and distorts messages between the brain/spine and the body — determines what symptoms someone may have.
If, for example, the area of the brain involving eyesight is compromised by the disease, someone’s visual abilities may be affected.
If someone has MS, you might not be able to tell they have health issues just by looking at them.
People with milder forms of the disease may appear asymptomatic. But all may not be as it seems.
Some of my MS symptoms become visible to observers when I’m trying to climb stairs and have to use the handrails to hoist myself up and forward as my legs become increasingly uncooperative.
It’s also obvious when, in hot and humid weather, I’m retching, weak, dizzy, and have to sit or lie down.
However, during the times when I’m dealing with cognitive issues, fatigue, or blurry vision, you wouldn’t know I have MS because from all outward appearances I would look “healthy.”
Remarks like, “but you don’t look sick,” are well-meaning but don’t take into account that what I may be experiencing is invisible to observers.
Instead, try asking, “how are your MS symptoms?” and leave it open-ended.
Before I had MS, I experienced fatigue. As a mother of three, including a set of twins and a third child who didn’t sleep through the night until he was 3, I’m intimately familiar with exhaustion.
Back then (all three are now in college), I could consume caffeinated beverage after caffeinated beverage and just keep going. I’d be cranky but still functional.
That fatigue is not the same as MS fatigue.
The best description I can offer of MS fatigue is to imagine a wall dropping in front of you — one you cannot go through, go around, or climb. You’re trapped. It forces you to stop right where you are and wait.
When MS fatigue is acute, my limbs feel leaden, I can’t focus, and I have to crawl into bed to wait until my body recovers — however long that may take, be it hours or days.
There are those with any number of diseases who consider the illness a blessing in disguise, something that forced them to slow down and deeply appreciate life. This group of people might include people with MS, some of whom bear the burdens of this illness with nary a complaint.
But not everyone with MS feels that way. Not everyone is sanguine about living with MS.
I, for example, still long for my multitasking, pre-MS ways, and have only begrudgingly agreed to live within the involuntary confines of my disease.
I’m not happy about it and don’t consider it a blessing.
When interacting with folks who have MS, please afford them room to be authentic in their individual reactions to their unpredictable situations.
Allow them to have bad days as well as good ones without saying something like, “Well, at least your MS isn’t like this,” or “Positive thinking will help you.”
We may not always feel like being positive.
I know you mean well. Really, I do. But please don’t tell me you’ve stumbled upon the cure to MS someplace online or on Facebook.
I see a neurologist who runs the MS clinic at a major U.S. hospital and don’t think he’s hiding the cure from me just so he can keep billing my insurance company for unnecessary tests and prescription medication.
Sure, share an article about MS that you’ve seen if you want to, but only forward pieces from legitimate websites and organizations that don’t claim things like eating a kale diet will heal MS brain lesions.
And please don’t tell me if I’d just do this or that, the MS will magically go away. Magical thinking won’t heal my damaged brain.
We will be appreciative if you’re looking out for us, but please be thoughtful about what you share and suggest.
Boston area writer Meredith O’Brien is the author of Uncomfortably Numb, a memoir about the life-altering impact of her MS diagnosis.